The tired tropes of special needs parenting

If you listen to or read pop culture reviews, you’ve probably stumbled upon a conversation about tropes, which are basically plot devices, themes or recurring character types. It’s impossible to tell a trope-free story; even our most basic story-telling devices are tropes, like having a beginning, middle and end, or the classic struggle between good and evil. Without them, stories are just random strings of images.storytropesbingo

When overused, tropes become clichés (Will they or won’t they?) or even offensive (“What do we do now?”). And sometimes, there are just so many of them going on at once that the result is referred to as a trope salad. Exploring tropes is fun, and entire websites and wikis are devoted to cataloging them.

When disability gets represented in life and culture, plenty of tired tropes surface. My Twitter feed was lit up last month with a debate around professional conferences that feature inspiring, overachieving people with disabilities, aka supercrips, a pop culture staple. Lately I’ve been irked by a reality TV home makeover show for a “needy families” willing to share their desperation and tears on cue so that they can be rescued by “angels” (no joke) and we viewers can feel blessed and generous. Representing disability in pop culture can be a bit of a landmine and I appreciate it when writers call out disability clichés.

As a special needs parent, my antennae are always up for tropes about parents like me. One of my first blog posts was about my love/hate relationship with Mamma Bear. I’m sure that I could find plenty of examples for clichés that I’ll just call Disengaged Dad, Super Mom, the Invisible Sibling, the Parents In Denial, and the Pity Family.

If we suddenly become special needs parents and we don’t have any other role models, there’s a risk that we actually adopt these personas. I personally auditioned for several of those roles. Sometimes I even got the part for a season or more. Award worthy performances.

Luckily, I also met plenty of parents who showed me that I didn’t need to play a cliché, because life was too complex and interesting. Parents who were strong and vulnerable. Who had their crap together most of the time, but didn’t apologize when they lost it once in a while. Who were incredibly creative problem solvers, except for that one area that was a total blind spot. These folks defy stereotyping and two-dimensionality. Just like all parents. Just like all people. Just like everyone, we contain multitudes.

Have you cast yourself in a role that was just too flat for real life? Are you doing it now? Do you know someone who is defying typecasting? How might you allow yourself to be a little bit more complex?

 

 

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Passages

I opened a book last week and a bookmark slipped out onto the floor. It was a freebie from a favorite bookstore from my old life, back when I lived on the other side of the ocean. I loved that bookstore, with its coffee counter and author events and the way it always had exactly the book I needed even when it didn’t have the book I wanted.

The bookmark skidded across the floor, a little wave hello from another time, another me, a reminder that of the actual physical things that I packed and carried with me from that life, fewer and fewer remain. Clothes have become too small, plates have broken, toys have become boring. The things have stopped fulfilling their purpose and have given way to new things. There’s nothing to do but let them go. A spot somewhere between my heart and my throat clenched in missing and longing.

Recently I realized I’ve spent nearly every weekend for the past five years frustrated that I can’t seem to get myself and the kids out of the house like we did when we lived in Boston. Back then, being home on the weekends was a real struggle; our son’s disabilities made it hard for him to sit with anything for more than a couple of minutes, cycling through toys and activities at a pace that I couldn’t keep up with. My own inability to sit with that fact had me crawling the walls. Weekends became about getting up and getting out. Picnics, walks, bike rides, car rides to ice cream stands miles away, zoos…we were great at getting out.

These days, we don’t get out like we did then. Our house and life work differently and being at home works more often. But somewhere along the way I forgot that we went out because we had to, and when we didn’t anymore I started blaming myself that I wasn’t doing a good job parenting.

Like stuff, activities, habits, rituals and routines stop being useful. I forget that sometimes and cling to doing things the way I used to do them or having the things I used to have. It’s gotten me thinking about how what other worn out expectations and habits I’m holding onto, how much energy I’m pouring in to maintaining our old way of life and blaming myself when I don’t. Some things are worth the effort, but some things are no longer fit for purpose. I’m going to think about that for a while, and am curious to hear what you cling to or have let go of, too.

 

 

Hello, hello

It’s been so long since I shared any writing here that I need to say hi before diving into my own stuff. Hello. How are you? What’ve you been up to? Are you taking care of yourself?

Speaking of hello

Last week I took my son to a pre-surgery appointment at the hospital. We hadn’t even reached the main lobby and I was feeling anxious and stressed about the upcoming surgery, and frustrated that I had to take him out of school for a visit that we probably could do over the phone. A cloud of general dread was also hanging around mostly because of lingering emotions hanging around from the six weeks we had spent there last year, triggered by the smell of the parking garage and the sound of the music in the elevator hall. Let’s just say I was not my best self.

And then something happened. Sitting on stool off to the side behind the front desk, a janitor was chatting with the receptionist. As we approached, he looked at my son and greeted him by name. “Hey buddy, how are you doing?” I hesitated for a second and the man looked at me and said, “I remember him from when he was here before.” It was really remarkable.

While it’s really impressive that he remembered us, I thought even more about the fact that he said hello at all, and how that made me feel. Saying hello can seem like a token transaction, but really it’s a way to let others know that we see them. My shoulders loosened. I was reminded of the importance of kindness.

Hälsa means both health and say hello

There is a beautiful word in Swedish — hälsa. As a verb, it means to say hello or to greet. As a noun, it means health. The words are connected etymologically from the word hel, which means whole and even perhaps from helig or holy, sacred. To say hello is to wish someone wholeness and wellness. How wonderful to be reminded that all these words are connected! A simple hi can say much more than we think.

Bringing back hello to healthcare — The 10/5 Rule

I remember reading about hospitals in the US launching campaigns to bring back saying hello in health care environments. Inspired by the service industry, they began adopting the 10/5 Rule, or the Hospitality Principle, to help instruct their staff on how to provide courteous service through greeting. The 10/5 basically recommends that when within 10 feet (3 meters) of a guest or patient, staff should smile and make eye contact; when within 5 feet (1.5 meters), staff should say hello. This also means that staff should stop their conversation with each other in preparation to greet.

What does this mean for health care?

The 10/5 Rule, with its roots in companies like Walmart and Disney, can seem like an American attempt to commodify courtesy or institute robotic friendliness. At the same time, I know that my experience as a caregiver and patient matters. When I’m treated well, I also treat others well, which must be better for staff in the long run.

So much of what we’re doing in hospitals these days when it comes to improvement is really expensive. New buildings, new IT systems, more staff. As a parent and patient, I know what feeling invisible, afraid and alone feel like, and sometimes I think healthcare is missing out when it focuses on the big ticket items and skips over delivering common kindness.

Personally this has gotten me very curious about how I say hello, and what it means to those around me. I’m going to be experimenting with how I can sincerely show the people around me that I see them and care about them. I’ll keep you posted. Until then, bye!

Other resources for “Say hello” campaigns

Implementing the 10/5 Rule in Nursing homes

A video from Children’s Hospital of Pittsburgh

Here’s a very enthusiastic training video from ASMMC Medical Center

Reflections from Tufts University professor on the power of saying hello from Psychology Today

Amy Rees Anderson shares background on the evidence of saying hello from Forbes magazine.

The new year as a threshold

Every moment offers a new beginning, but there is something special about the collective transition from one calendar year to the next.

It is and always has been a struggle for me not to get too caught up in new beginnings like this, to not be spellbound in the illusion that simply resolving to change will bring change, or that most of the mundane changes I desire, will bring lasting happiness.

And yet. A new beginning like a new year, if I use it skillfully—it can be an opportunity. It is a threshold at which I can pause and listen, receive instruction and energy, and set an intention. I can investigate and appreciate what has led me to this moment, and decide what can be let go of.

Last year I participated in a program that did in fact harness the energy that exists for me in the beginning and the ending of a calendar year, called One Little Word. Created by Ali Edwards, it involves choosing a word to focus on for the year, and as she says, “to live with, investigate, to write about, to craft with, and to reflect upon.”

My word for 2017 was Soul, and using monthly creative prompts from Ali I played with the word in all sorts of ways—set intentions, created a vision board, put together a play list, and a bunch of other fun things.

I’ll be doing it again this year, and my word will be Listen. As in listening to my inner voice, to others, and ultimately, listening to what can be be called my higher power, God or the Universe. But really, there were hundreds of words that are worthy of choosing—the gift is picking one and sticking with it while it works its magic.

One Little Word allowed me to shift away from seeing the new year as a pristine piece of white paper which I should resolve not to ruin, to instead seeing it as the space in which I can play and explore with intention, curiosity and imperfection.

If that appeals to you in any way, check out the One Little Word program for 2018. It would be fun to connect around it.

And just to clarify, I’m not an affiliate and don’t receive any money from Ali. As part of the class you can purchase some cool scrapbook/kit-making merchandise, but I used a sketchbook and my own crafty supplies.

 

Say my name, say my name

Having just hit the four-year mark of living “far, far away,” I’ve been wrestling with my American-ness lately. Not in terms of politics or current affairs, just generally about where my American identity appears on the Venn diagram of me.

Culture is easiest to see when you step outside of it. Having a culture is what gives that exciting electricity when looking out the window of a cab on the way from the airport in a new place. Sometimes stepping out of one’s culture reveals that deeply held truths are actually just opinions. I see this in the flares of annoyance I feel around unnecessarily time-consuming recycling systems (my kingdom for a single-stream receptacle with curbside pick-up!) or the unspoken social conventions when meeting someone in a public doorway (clearly it makes sense to hold the door…or maybe not).

I’ve made some accommodations to my new homeland. I’ve set my calendar app to start my week on Mondays. I celebrate Easter Eve. (Don’t ask why, because I don’t know.) I make stronger coffee, and I try to drink it sitting down. It just happened.

Other concessions are harder to make. I still prefer to American books, podcasts, TV and movies. It’s not just a lazy language thing, but the settings and the references. It’s about seeing the world with an American gaze.

There’s another aspect of cultural identity I’ve been thinking about lately: its purpose of providing contours to my otherwise diffuse psyche, like personality eyeliner. A lifetime of fourth of July sparklers, yellow school busses and two-for-Tuesday rock blocks has resulted in a very particular person who is me. If I let this container go, will I still be me? Of course I will, but will I really?

But what happens when cultural identity is not so much a vase for our bouquet of personal quirks, but more of a box, closing us off? Can it be made permeable? I think so. With little conscious effort, the box is becoming more of a butterfly net.

Take my name, for instance, for which I have most definitely not nailed down a consistent pronunciation. Some days I introduce myself and pronounce its ‘r’ with such an American accent that I risk swallowing my tongue. Other days I’m happy to let it softly tap the roof of my mouth, behind my front teeth, in the way that my new language wants it to be.

Some days the container is more permeable than others. I feel slightly more invisible, more diluted, but also more connected.

I have other containers. Woman. Mother, even Special Needs Mother. Employee. Nearing 50. Immigrant. Each one has its own comforts, its own limitations.

I’d be really curious to hear from others whose identities have become more like butterfly nets. What made you aware of your containers? Did you find parts of you that transcend labels? What are they like?

Overcoming paralysis with a single step

In a recent stress dream, I sat in an airport coffee shop knowing I was supposed to board a plane, but with no recollection of when the it was going to take off or from which gate. Despite being surrounded by information counters and departure displays, I just sat and sat, paralyzed and ashamed, with no sense that there was anything I could do.

Of course, these stress dreams usually occur for a reason.  My son has been getting hurt lately due to an unusual symptom that makes him fall down at sudden noises, and I’ve known for a while that it’s time to do something about it if I want to keep him safe. But the anecdotes I’ve heard from other parents who have kids with this rare syndrome have given me the impression that there aren’t really any good solutions, and each one caused its own negative feeling. The options appeared to me to be as follows: have him start using a wheelchair (makes me sad to think of limiting his mobility on purpose), start on heavy-duty personality-deadening anti-psychotic medication (ugh!), finding a helmet or brace or full body bubble wrap (makes me worry that he will incur even more stares than normal), or collaborating with industry for new applications for existing technology for sound-blocking headphones (makes me feel exhausted just thinking about it), etc, etc. Or I could just doing what I’m doing now, holding my son’s hand whenever he is standing up, even in the house (which is making me feel strung out). So I have been doing nothing, just sitting at the airport waiting to miss the plane.

This morning my husband and I had a quick huddle: I would ask the parent community of my son’s syndrome for their advice, my husband would research headphones. Within minutes of posting my inquiry to the Facebook group (“Help! It’s time! Tell me what you did and help me figure out what to do!”) I had responses. Not perfect answers, but ideas. I realized that many of my fears were completely exaggerated. The drugs weren’t all bad. There was a special walker that could work. The wheelchair wasn’t the worst thing. And most of all, there was company and commiseration.

My recent dream hit all my nightmare buttons: being late, unprepared and disorganized, inconveniencing and disappointing others, appearing and actually being incompetent (two separate but equally humiliating fears). But what really scared me in the dream was observing myself be unable or unwilling to do anything about it, the acceptance of paralysis. Today reminded me that there are plenty of times I’m scared stiff, and that sometimes all I need to do is to take just one small step, especially when that step is asking for help and companionship. Because being afraid is bad, but being paralyzed by that fear is the real nightmare.

Do you have a scary aspect of your child’s care or development that’s got you frozen? What small action could you take that could help you get unstuck–even if it’s as simple as asking for company?

 

Getting off on the wrong foot

Skärmavbild 2017-04-03 kl. 19.29.30.png“Louis, this feels like the beginning of a beautiful friendship” says Humphry Bogart as Rick Blaine in Casablanca. I don’t recall what Louis had said or done to prompt Bogie’s remark, but it certainly wasn’t whatever happened to me today when my son’s new doctor’s office called.

Walking to the bus on my way home from work, my phone rang. Blocked caller ID, which for me means only one thing—health care. I answered despite walking on a dusty, busy highway with a nearly dead cell phone. “Hello, this is the XX office at YY hospital. Your son had an appointment today at 1pm. I’m calling to find out what happened.”

My mind started racing through the pile of mail on the kitchen counter. No, I would have remembered if we had been “summoned,” as I like to call it; in our new country, the overwhelming majority of health care follow-up and specialty appointments are scheduled by health care letter that lands without warning, sometimes with as few as three days notice of the appointment but usually about two weeks. The assumption must be that people are happy to take off work to go to these appointments, because the process of rescheduling them usually involves finding one’s way to a phone during a very limited “phone time” window, nearly always during business hours. Busy signals, call back queues–and most perplexingly, sometimes the only option is to cancel the appointment and then wait for another summons, hoping that the next appointed time spat out by the scheduling roulette is better. If not, see step 1.

But back to the dusty highway. Later searching of the kitchen counter pile confirmed that I had in fact never received notice in the mail, and I confidently said so. “So you’re saying you never got our letter? It was mailed out on March 14,” the nurse said curtly. Clearly, she didn’t believe me. “Well, I guess we’ll have to reschedule it,” she said. “I guess so,” I said, equally incredulously. What exactly was she hoping I would say? “No, let me fly counter-clockwise around the globe and reverse time?” She said she’d send a new time by mail, and I managed to get her to schedule the appointment right then, to avoid having to move heaven and earth at work at a later date. She curtly said she’d still send me the mail, and follow up with a text reminder. “Fine, do whatever you want.” I’m sure she could hear my eyes roll.

I’d hazard a guess that hundreds of thousands of health care visits were missed around the globe today because patients didn’t know they had one, didn’t understand why they needed to be there, or found the rescheduling process impossible. Or maybe because they hadn’t even had a chance to open the mail. Hundreds of thousands of hours of wasted clinic time. Irritation and suspicion all around, at the tender point in the relationship when we should be building trust and confidence. 

Patronizing finger-wagging and mistrust on her end.  Irritated petulance on mine. Is this the best way to start a beautiful friendship? I don’t think so. I wonder what Bogie would say to that.